[runlacie]

in reply to: Treatment Suggestion: Rad. Iodine vs. Anti Thyroid Drugs #1068216

Hi Trey! Sorry to hear your news but fortunately we are very treatable whichever route you decide on. I guess you’ve noticed that a lot of that weight loss is your muscles just fading away. I was in marathon shape (having just unknowingly ran one with the beginnings of Graves’) when I was dx’d. I did rai because I thought it would be the quickest way back. Unfortunately, I had to wait a long time (I still do not understand why) for my rai, but then I did improve quickly after that. I was diagnosed at the beginning of June, had rai on 7/20, and now not yet 2 months later am feeling the effects of hypo though I have not clinically gone hypo yet. I was not able to run while I was hyper because my HR went too high, but I did continue walking about 35 miles per week and also continued with lifting and core work. My muscles still died, for instance, I regularly did 100 pushups pre-Graves’ and that dwindled down to 50- but I have since added back to 75 again. In my Graves’ adventures, I have found runners who did well either way, rai or ATD’s. Also, on this board are men (you are much rarer), who have had good results with each treatment. The only reason I am not 100% satisfied at this point is that I still think maybe I would have been back running sooner had I tried ATD’s right off the bat rather than waiting almost 6 weeks to do rai. But it sounds like your doc is right on top of things and you could get back to your normal routine a lot sooner. With the ATD’s I was mostly afraid of the side effects. Even though they are very rare, I am something of a hypochondriac and just knew I’d be freaking out at every little thing thinking something bad was going on. With the low percentage of remissions, it just wasn’t worth it for me to try. Much easier to go take my one little pill and wait for my thyroid to die. All you can do is continue reading all you can and make your own decision. There’s really no one size fits all right or wrong and it seems to be something of a crap shoot no matter what you do! Good luck and keep us posted.

[runlacie]

in reply to: Raising hormone levels with levoxyl #1068257

About the low heart rate, she wasn’t worried about that or the blood pressure. at all. Guess I’ll just keep slugging along. I need to go do ironing and don’t feel like even standing up, but if I take a nap now I won’t get it done before school lets out. I’m procrastinating on the computer. While I drink my 10th cup of coffee.

[runlacie]

in reply to: So, why can’t I start replacement thyroid? #1068253

Her explanation was that since my TSH was still only .018 on 9/4 that she wants to see it increase first so that it can tell my thyroid to make hormones and we can see. Even though my T3 and t4 were close to the bottom, I guess my pituitary needs to tell it to make more and then if my TSH skyrockets with no response from the thyroid we’ll know it is dead. I felt pretty good last week and think that was about normal, so I agree it would be nice to start something small right now just so I don’t have to totally bottom out. I bet if she’d have agreed to do labs today that my TSH would be up and we could just start from here. Oh, well. Who am I to know my own body anyways??? Maybe I will still get lucky and the lil bugger will make some on it’s own. Doubt it, though, since my labs seem to show a pretty steady and quick downward trend to hypo.

[runlacie]

in reply to: Raising hormone levels with levoxyl #1068255

Hi ewmb! Yeah, sounds to me like you need a bigger dose, too. The way my endo explained to me today was that they have to give it 4-6 weeks to see before they change anything. She did tell me she’d probably start me at 50 and then if I felt too hyper right off we would go down to 25. But you took such a long time to finally go hypo, maybe your doc doesn’t wanna have you ending up going the other way again? I totally know how you feel, this sucks and I feel like a slug. I don’t like driving, either. I never fall asleep when I drive but now I feel like I could just take a little nap, everything seems in slow motion! And the scarey thing is I drive all day at work. Last night I forced myself to go run around the neighborhood and thought how easy it would be to fall asleep when RUNNING! I guess it’s better than going a zillion miles an hour. Or maybe not, I don’t know anymore. I have been drinking a ton of coffee (pushing 2 pots) just to stay coherent, and I still feel like just lying down and taking a rest all the time. I swear it’s just like all the food we ate when we are hyper coming back to pack on the pounds now, it’s the same with all of that energy- now it’s saying OOPS, that wasn’t yours and we are coming to make you repay it!

[runlacie]

in reply to: First TSH reading since I started Synthroid 6 weeks ago… #1068243

Hey Krystal! Good to hear from you! Sounds like the bad days are getting fewer and fewer, WTG! I now totally understand what you mean when you say "wall hugging" lol, I was like what on earth is wall hugging? Well, I GET IT. haha. Sometimes it’s more like floor-hugging when I just lay on the floor and feel like I am plastered there. So, we went from bouncing off the walls to wall hugging. Fun w/Graves’! Have you lost any weight since taking the replacement? Or managed to stay the same? That’s my biggest gripe right now. Well, I’m glad you’re doing okay and look forward to catching up more when you get time!

[runlacie]

in reply to: So, why can’t I start replacement thyroid? #1068251

Well I went to the doctor this morning and she told me I really should wait a bit longer just until the TSH starts coming up – that way whatever thyroid I have left has a chance to work on it’s own – just in case I’m in that lucky (but small) percentage that stays euthyroid after rai. We did talk about whether to go with the generic or levo and agreed on levo, and she got my pharmacy number so I will be all set and not need another appointment right away. I agree that the TSH does lag behind and waiting is kind of cruel, but I guess I want to know for sure, too. She isn’t worried about my low HR or BP, either. I felt better last night and today and so I was okay with waiting until next Monday for the lab draw. I’m tired now, though. Feel like I need a nap. Ate 1900 calories and ran 6 miles yesterday and still gained another pound. grrrrr. Don’t get why she just didn’t explain it better on the phone since the nurse wasn’t going into enough detail to satisfy me. Oh well… at least I don’t have to go back until November now.

[runlacie]

in reply to: 6 weeks post RAI and all better?!? #1068404

Just an update that I feel awesome. I can run fast again, my HR finally stays where it should. I have loads of energy and can tell that my strength is back, building muscle again. Only prob is that I am gaining weight – and it’s not all muscle – I can see it is fat. Hardly eating at all and running every day and still gaining. No news from the doctor on the labs I had done over a week ago (shame on them) I was too busy working to pester them about it, but I will call Monday.

[runlacie]

in reply to: Weigh-in (just for fun) #1068741

Well weight loss Graves’ friends, I seem to have a problem! I’m getting thicker by the day! Hardly eating and running my butt off and it’s like I’m a SPONGE and I’m rapidly expanding!!! It’s all that food I ate when I was hyper coming back to haunt me– nothing is free, right??? I feel awesome, though. I feel strong and can run fast again. I worked 6 days this week, ran 7 days, kept up with all of my housework, did my core exercises every day and have energy again. I EVEN COOKED DINNER last night – which I NEVER do. I guess next week I really need to write my food down. Maybe I’m hypo? Who knows– since the darn doctor office never called me back with my results from over a week ago. I was too busy to bug them about it. I think I need a new doctor. My clothes that were too big when I was hyper are starting to be too tight and I can see that I am retaining more water as I look puffy. I keep thinking the weight has to stabilize at some point since I am really hardly eating at all- but the scale just keeps going up, up, up!

[runlacie]

in reply to: 1 Day After RAI #1068291

Hi ncgal! Hope you are feeling better today! How are your symptoms? Could be that your HR is up from the cells dying off and releasing hormones. I noticed a lot of ups and downs for about the first 6 weeks – but as time went by there were less and less "hyper ups" and more and more "normal downs". Also, I had a sore throat on and off for at least a month- not bad, just minor, but it seemed like whenever I had the sore throat I’d notice that I felt more hyper. I had RAI on 7/20 – so almost 2 months now and I am feeling fantastic these days. Don’t hesitate to call and talk to the doctor or nurses about any problems or questions you have. Best wishes and keep us posted, OK?

[runlacie]

in reply to: overly paranoid?? #1068269

Yeah, agree with Ski you can easily get your thyroid levels checked out- better safe than sorry. I wouldn’t think those symptoms are normal and you do need to find out what’s up, whether it’s Graves’ or something else. Good luck and keep us posted.

[runlacie]

in reply to: Weigh-in (just for fun) #1068728

139.5 so I think I’m up a pound from last week. 4.5 pounds from where I should be. I ran 30 miles last week and still gained, so that really stinks. Shooting for 40-50 mile range this week and since I have to work all week and I don’t eat much at work (I can’t since I am in my car all day), hopefully I can do better. Work, run, and sleep. Those are my plans for the week. No time to eat. ” title=”Wink” />

[runlacie]

in reply to: UP UP and AWAY! #1068347

ewmb – mmm, I love coffee. Even when I was waybo-hyper I still had to have a pot a day. Right now I’m seriously getting fat. I look THICK, even my arms and legs – like overnight I’m turning into the incredible hulk or something. I guess I shouldn’t be surprised since my muscle all wasted away seemingly overnight when I got sick. I’m scared to get on the scale . And I’m hardly eating much of anything at all! Either I’m hypo or else I was borderline hyper for a lot longer than I thought cause I could always eat 1500 calories and not gain. Now I’m eating less than that AND running. Hope you enjoy the rest of the holiday weekend. Wow, looks like we can finally see the other side of the tunnel from this mess, huh???

[runlacie]

in reply to: Katet.. Going in for RAI today! Good luck! #1068334

Best wishes Katet! I felt a new calm after my rai, just from having it over with, I hope you feel that way, too- and also that it works quickly for you! ” title=”Wink” />

[runlacie]

in reply to: UP UP and AWAY! #1068345

SO, I woke up last night in the middle of the night and my HR was 40. I’m cool with 45- since that was my resting heart rate before all of this, and quite possibly it could have been 40 in the middle of the night before… but I decided I’d better get my labs done today rather than wait. Had to beg to get them done since my endo is off on Fridays and the office wouldn’t call her, they said I could make an appt. and see my family doctor- but I told them that was quite silly to waste a doctor appointment, my money, my insurance money, when all I needed was labs and I had a scrip for Sept 21, I just needed them now instead. I told them I’d just have my husband call the family doc on his cell since they are friends, and then eventually I told them NEVERMIND, I’ll just go to the ER if I think my pulse is too low.. finally she (the receptionist) said she’d speak to the doctor and call me back. Anyways, she called back right away and said the doctor said go ahead in and get them done today. I guess you just have to be persistent sometimes- my husband made up a new word and said I was "bitchsistent", but it worked and anyways I shouldn’t have to beg and plead for labs. Now I have to wait until Tuesday for the results. And I guess I’ll just jump up and down if my pulse gets too low, haha.

Maybe I am up up and away, too??? ” title=”Cool” />

[runlacie]

in reply to: 6 weeks post RAI and all better?!? #1068400

Julie,
+1 to what SKi and ewmb said. You’re much better off with a large enough dose to make sure it works and you don’t have to do it again. I really don’t think my dose was large enough and I am worried that it won’t completely work, that I’ll end up having some functioning tissue left and it will go awry- either by making me hyper again or causing other problems from that damaged tissue (cancer?). Even though I feel pretty much all normal, I still have some weird times when I feel more hyper, so already I’m concerned that it’s still shooting out inappropriate hormones. Going hypo from total ablation isn’t a problem, and in my opinion the sooner the better that way you can get it regulated with replacement. The replacement hormone is no big deal and the same as what your body produced – in time, people on replacement say they don’t even think about it, they just take the pill and go on with their day. I hate medicine and pill taking of any kind, I don’t even take vitamins- but being on replacement is a better option for me than being borderline hyper or having to take ATD’s. And they do base your RAI dosage on the size of your thyroid, your uptake levels, the severity of your disease, how long you’ve had it, etc- so try to trust that they are doing the right thing with your dosage and talk to your doctor more in depth about it if it will help you to feel better. Let us know how Friday goes – the only difference I felt at all the first few days was a new calmness that it was done with.

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